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Ectopic heart beats/Arrythmias, Implantable cardiac monitors. Where to go & what to do next?
Hi I am a 33 year old female, who has been experiencing frequent ectopic heart beats and associated dizziness & light headedness for the past 6 months. I am desperate for any advice or suggestions to help with my problem. I have given a detailed history of events, which some of my experiences are extreme & a compounded by a run of very bad luck, but I am grateful to anyone that will listen & read my story!
I have collapsed when my heart rate has gone too fast & the ectopics have been frequent (feeling like a flip flop thud in my chest & what feels like every alternate heart beat is skipped with dizziness & lightheadedness being the precipitating factors). I have had a holter monitor for 4 weeks, which showed frequent ectopics and regular post ectopic pauses, but unfortunately the machine malfunctioned and did not catch a collapsing episode, much to my disappointment and also my cardiologists. He says that the ectopics are not the issue, but he wants to get to the bottom of my collapsing episodes, as they are descriptive of a heart problem of sort. I am fully aware that making lifestyle changes can help alleviate symptoms, but with me, this does not seem to be a contributing issue.
The cardiologist offered to impant a Reveal Cardiac Monitor (which was inserted under local anaethestic & records my heart rate continuously, it also automaticaly triggers when I have a sustained arrythmia, and also i had a device which I could activate, or my friends/family could should I collapse before being able to activate it). Great, I thought, finally getting somewhere. Anyhow, after initiial problems with bleeding post operatively, I was allowed home, and the sutures were to be removed in 10 days. That's where my issues got a considerable amount worse. I was in so much pain & had to support myself by holding the insertion site every time I moved. I though I was being pathetic as it was described to me as "a simple proceedure", so I must be a whimp, I thought. So I stuck with this pain for 4 days and nights.
On the 5th day, I woke in the morning to find that my wound had oozed this green/bloodstained brownish gunge from the insertion site, but the pain began to ease. To cut a long story short, it was decided by my GP & the nurse that although my wound was oozing this gunge & the skin was red around the suture site, it WAS NOT INFECTED & they DID NOT feel that I needed antibiotics. I visited the GP twice during the next few days,and still they declined antibiotics.
Well on day 10, I went back to the GP to have the sutures removed, and things got worse. As soon as the sutures were removed, the wound completely opened up, still gungy and the cardiac monitor was visible, so they now decided that I should be on antibiotics but did not feel that I should be worried that the monitor, which was supposed to be under the skin, could now be seen clear as day. Needless to say as soon as I left the GP surgery, I contacted the hospital department where I had had the monitor inserted & explained that the wound had not healed & should I be worried that I could see the monitor. With this, the hospital said to come straight away & they would get the cardiologist to see me asap.
Next stop, the hospital. Well the cardiologist took one look at the wound & was horrified. Started me on strong antiobiotics & wanted me in surgery within the next few hours. The Reveal cardiac monitor had to be removed straight away! I was mortified to say the least. I hadn't expected him to remove the monitor at that instance. So, I was in surgery again, & the monitor removed, wound cavity flushed with antibiotics, but the extent of the cavity meant that they were unable to sew the wound back up,so am now left with a hole in my chest where the monitor once was. Three weeks later, I am still on antibiotics, having twice weekly dressings to pack the wound & seeing my cardiologist weekly to assess the wound healing.
The plan is, when the wound heals up, the Reveal monitor is going to be put back in. But in the meantime, I have to still put up with regular ectoptic beats & the awful sensations they inflict on me. I keep saying to the doctors that the ectopics/arrythmias are the main issue for me at the moment, but they do not seem interested that they are causing havoc with my life. Does any one else have this issue with ectopics? Is there any form of medications that can help? Should I be a bit more pro-active & forceful with decisions? Please can anyone help me?
I have collapsed when my heart rate has gone too fast & the ectopics have been frequent (feeling like a flip flop thud in my chest & what feels like every alternate heart beat is skipped with dizziness & lightheadedness being the precipitating factors). I have had a holter monitor for 4 weeks, which showed frequent ectopics and regular post ectopic pauses, but unfortunately the machine malfunctioned and did not catch a collapsing episode, much to my disappointment and also my cardiologists. He says that the ectopics are not the issue, but he wants to get to the bottom of my collapsing episodes, as they are descriptive of a heart problem of sort. I am fully aware that making lifestyle changes can help alleviate symptoms, but with me, this does not seem to be a contributing issue.
The cardiologist offered to impant a Reveal Cardiac Monitor (which was inserted under local anaethestic & records my heart rate continuously, it also automaticaly triggers when I have a sustained arrythmia, and also i had a device which I could activate, or my friends/family could should I collapse before being able to activate it). Great, I thought, finally getting somewhere. Anyhow, after initiial problems with bleeding post operatively, I was allowed home, and the sutures were to be removed in 10 days. That's where my issues got a considerable amount worse. I was in so much pain & had to support myself by holding the insertion site every time I moved. I though I was being pathetic as it was described to me as "a simple proceedure", so I must be a whimp, I thought. So I stuck with this pain for 4 days and nights.
On the 5th day, I woke in the morning to find that my wound had oozed this green/bloodstained brownish gunge from the insertion site, but the pain began to ease. To cut a long story short, it was decided by my GP & the nurse that although my wound was oozing this gunge & the skin was red around the suture site, it WAS NOT INFECTED & they DID NOT feel that I needed antibiotics. I visited the GP twice during the next few days,and still they declined antibiotics.
Well on day 10, I went back to the GP to have the sutures removed, and things got worse. As soon as the sutures were removed, the wound completely opened up, still gungy and the cardiac monitor was visible, so they now decided that I should be on antibiotics but did not feel that I should be worried that the monitor, which was supposed to be under the skin, could now be seen clear as day. Needless to say as soon as I left the GP surgery, I contacted the hospital department where I had had the monitor inserted & explained that the wound had not healed & should I be worried that I could see the monitor. With this, the hospital said to come straight away & they would get the cardiologist to see me asap.
Next stop, the hospital. Well the cardiologist took one look at the wound & was horrified. Started me on strong antiobiotics & wanted me in surgery within the next few hours. The Reveal cardiac monitor had to be removed straight away! I was mortified to say the least. I hadn't expected him to remove the monitor at that instance. So, I was in surgery again, & the monitor removed, wound cavity flushed with antibiotics, but the extent of the cavity meant that they were unable to sew the wound back up,so am now left with a hole in my chest where the monitor once was. Three weeks later, I am still on antibiotics, having twice weekly dressings to pack the wound & seeing my cardiologist weekly to assess the wound healing.
The plan is, when the wound heals up, the Reveal monitor is going to be put back in. But in the meantime, I have to still put up with regular ectoptic beats & the awful sensations they inflict on me. I keep saying to the doctors that the ectopics/arrythmias are the main issue for me at the moment, but they do not seem interested that they are causing havoc with my life. Does any one else have this issue with ectopics? Is there any form of medications that can help? Should I be a bit more pro-active & forceful with decisions? Please can anyone help me?
I'm curious about what transpired with you & if you have gotten relief. I too have syncope & collapse w frequent PVCs & also some bradycardia & tachycardia (that looks atrial). Sudden onset. At first, after the Holter didn't show any vtach, I didn't want to do anything, but after a few collapses over the steering wheel in a parking lot, I changed that attitude. I've had 2 attempted ablations (ectopic ventricular focus mapped in the L ventricle right on top of the LAD, now thought to be accessible only through the chest & too dangerous for RFA) & have been on many drugs & combinations. The anti-arrhythmics are just awful! Not sure which is worse, but the drugs are effective. Anyway, looks like it's going to be off for the 3rd procedure through the chest since I just can't take the dizziness from the drugs. Hope some of this is helpful- I have identical symptoms to yours & although I have a structurally normal heart, my guys seem to be more aggressive, especially since cardiomyopathy can develop with very frequent PVCs. Kind of surprising since I'm much older than you but it may be because they are induced w exercise.
thankyou everyone for your advice, I am due to see the cardiologist on the 9th January {due to the christmas break etc} it will be then, that he will tell me what he wants to do next. In the meantime, I am struggling on as normal. The only good thing is that my insertion wound cavity is now beginning to heal exactly a month after I had the "simple procedure that was supposed to be a turning point in my battle for answers".
will keep everyone posted om events.
will keep everyone posted om events.
I'm pretty sure about this: External moniors can be pre-progammed to auto-record a particular type of cardiac arrythmia. Mine was set to auto-record rapid rates associated with SVT. They can also be set to jump back precribed amount of time, and then record forward a settable amount. Mine jumped back two minutes then forward one minute from the event initiation. IMO, implantables are for long term extreme cases, However, please note the absence of "M.D." following my user name! I hope things work out for you.
Thankyou everyone for their advice. I have unifocal PVCs averaging 800 an hour. The consulant said that the external monitor was an option, however because my ectopics and arrythmia are varying from extreme to irregular, it relied on me triggering the external machine, but with the implanted one it will automatially pick up heart rhythms and given them a better idea as to what happens in the lead up to me collapsing as it records automatically the previous 10 mintues before event. I keep asking for medications but they keep saying they want to get to the bottom of the other symptoms of collapsing.
I keep saying it is the ectopics that are the most problematic as the collapses are not very frequent. But they want to get to the bottom of the collapsing & fast arrythmia that I have(which comes with no warning and disappears just as quick,but makes me feel tired, lethargic & extremely dizzy. After the event I feel like this for a good hour or so). The Consulant feels that starting me on beta blockers will mask the other things from happening before they can accurately diagnose. It is a constant battle. Stress is a trigger, but I try to limit the amount of stress I subject myself to and try to avoid it as much as possible. Other than stress, the PVCs occur as frequently as they do without added stress. It's all a mixed bag of complete mess & I dont feel I am getting anywhere fast!
I keep saying it is the ectopics that are the most problematic as the collapses are not very frequent. But they want to get to the bottom of the collapsing & fast arrythmia that I have(which comes with no warning and disappears just as quick,but makes me feel tired, lethargic & extremely dizzy. After the event I feel like this for a good hour or so). The Consulant feels that starting me on beta blockers will mask the other things from happening before they can accurately diagnose. It is a constant battle. Stress is a trigger, but I try to limit the amount of stress I subject myself to and try to avoid it as much as possible. Other than stress, the PVCs occur as frequently as they do without added stress. It's all a mixed bag of complete mess & I dont feel I am getting anywhere fast!
Have you at all been offered Beta Blockers? My doctor see this a the first option to symptomatic ectopics. You are also very stressed out which will make the ectopics worse so you may want to try anxiety meds for even just a short while. Good luck. I hope you get this all straightened out.
Ouch, why an experience you had!
I agree with tom h: The implantable sounds a bit of an extreme response to a malfunctioning external. Why did they not just give you a different external monitor?
This is particularly relevant if the ectopics they did catch on the first machine were rather ordinary, something like unifocal PVCs. Is that in fact what was found before the machine malfunctioned? Did they tell you what kinds of ectopics they did see?
As to fainting, yeah, it is something to make a cardiologist's ears perk up when he hears about it, but very sensitive people also faint from the fright they experience when feeling ectopic beats. It sounds as though you are very disturbed by what you feel, and since anxiety can be a factor in making these blankety-blank ectopics worse, I would suggest that while you are healing up, it would be a good idea to talk with a specialist who deals with anxiety. I am not joking here: This kind of help will make it easier for you to take a rational approach to what you are going through.
I agree with tom h: The implantable sounds a bit of an extreme response to a malfunctioning external. Why did they not just give you a different external monitor?
This is particularly relevant if the ectopics they did catch on the first machine were rather ordinary, something like unifocal PVCs. Is that in fact what was found before the machine malfunctioned? Did they tell you what kinds of ectopics they did see?
As to fainting, yeah, it is something to make a cardiologist's ears perk up when he hears about it, but very sensitive people also faint from the fright they experience when feeling ectopic beats. It sounds as though you are very disturbed by what you feel, and since anxiety can be a factor in making these blankety-blank ectopics worse, I would suggest that while you are healing up, it would be a good idea to talk with a specialist who deals with anxiety. I am not joking here: This kind of help will make it easier for you to take a rational approach to what you are going through.
Because implantables can be "worn" for up to 3 years, it increases the chance of capturing your heart rhythm during infrequent fainting spells. But you told us that you first tried an external montor and it captured a number of events. So I'm wondering why an implantable was offered when it was probable that cardiac anomalies would be captured in a much shorter duration than what would be seen with them. I've worn a 30 day before. I ran, skate, and even had a number of bedtime "activities" while wearing it. So what's wrong with giving an external another try?
Yes, I'd would not just go along with what your medical advisors are recommending you to do. Get involved!
Yes, I'd would not just go along with what your medical advisors are recommending you to do. Get involved!
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